sudden sensorineural hearing loss – My Hearing Loss Story

Eva’s Hearing Loss Story

‘… a few months back, I decided that I was going to do whatever I wanted to do, without hesitation…What happened? I wasn’t perfect, but I was pretty damn good!’

Following my hearing loss in 2016, I started writing a blog as a way of documenting my thoughts, feelings and observations. It is through my blog that I have connected with many people who have experienced different forms of hearing loss, all with their unique stories.

Hearing loss can present many challenges, both practical and emotional, to the lives of those affected. When we exchange hearing loss stories, we have the opportunity to increase our understanding of the difficulties that living without full sound can bring, and we can use this knowledge, and the advice of others, to develop our coping mechanisms. I have realised the comfort in sharing experiences. Sharing my story has helped me to feel part of a supportive community and I feel less alone in my hearing loss journey.

Let’s Meet Eva

I first ‘met’ Eva in April 2019, when she contacted me through my blog, two months after experiencing a profound sudden hearing loss in her left ear, very similar to mine. She also has tinnitus and some slight balance issues, which accompany her hearing loss.

Eva is 45 and is from Southern California. She enjoys hiking in the mountains and the beautiful Californian terrain, playing golf, yoga, attending her local book club meetings, and spending time with her friends and family. She was working as a director in the business office at a local college but recently stepped down from this demanding position as a result of her sudden hearing loss. She is now in a less demanding role at the college and continues to work full-time.

She has a positive approach to dealing with her single-sided deafness and is working to recover her life since her loss. Eva and I have talked a lot about hearing loss grief, something which we both identify strongly with. She recently remarked, “I hope someday soon my usual cheery self will be my default setting again and not something I have to work so hard to achieve each day. I’m getting there and have made tons of progress.” She recently acquired a CROS hearing aid and she is currently trialling it to see if it will provide her with adequate support. She says, “The jury is still out”.

Eva and I have formed an online friendship, based on regular communication through Email. She kindly allowed me to interview her, during which she gave a very honest account of her hearing loss story…

Eva, has your life changed since your hearing loss?

The first six months following my hearing loss were significantly difficult, but things are starting to settle now that it has been 9 months.

At first, I could not sleep. I do not know if it was tinnitus or anxiety, or my body freaking out due to not receiving input from one ear. I would wake up in a severe panic any time I’d fall asleep for even just a few minutes. I am sleeping much better now, my body has adjusted. It is still not as good as it was before the hearing loss (I was a great sleeper, could sleep 8 or more hours straight if you’d let me), but I am getting at least 4 hours per night each night.

I also had a lot of sensitivity to loud noise, so it was difficult to be in many situations, such as restaurants, church, family parties, etc. I kept pushing myself to be in noisy situations and I find that I am more used to it now, it doesn’t bother me very much anymore. Loud noises would sound so terrible as they entered my damaged ear and would cause awful noises, it still does but I am more used to it now.

Of course, my limited hearing makes certain situations difficult. I have to lip read a lot more, I’m getting better at it. I am very aware of where I am in a room to ensure I will be able to hear. Sometimes people call out to me or approach me from my deaf side, and I have no idea they are there. I am often surprised to see someone standing next to me, sometimes they are talking to me and I have no idea.

Finally, I feel this has greatly affected my relationships with those closest to me as it is difficult for them to understand why I am down. I try really hard not to be down, but it is difficult and I think they may become tired of my negative energy. I know I will come out of this, but it is taking time and I cannot force it. I need time to grieve.

What have you found the most challenging about living with hearing loss?

Strangely, the hearing loss itself is not the most challenging. It is challenging, but my one good ear provides sufficient hearing to function in most situations. The more challenging part is the psychological and emotional part. The grief, the depression, the anxiety, the inability to sleep, the toll it has taken on my relationships, the blow to my self-confidence.

What advice would you give to someone who has recently experienced a sudden hearing loss?

I believe meditation, taking walks, and positive journaling has helped me tremendously to cope with the psychological turmoil that comes with sudden hearing loss. I think any person, healthy or not, should start practicing meditation, so that when something terrible strikes (and it will!), you have built experience meditating. Same goes for taking walks and positive journaling. It is very difficult to get used to your entire world sounding different, the tinnitus, etc. and you can never escape it, so keeping your mind calm and focusing on other things (by meditating, journaling, taking walks) will help get you through.

Eva also gives encouragement to others and shares her advice in my Facebook support group. In a recent post, she shared her positivity with the other group members in an inspirational comment:

‘… a few months back, I decided that I was going to do whatever I wanted to do, without hesitation. I was going to end the negative self-talk and the fear and just get out there and do my best. I got on an airplane, I swam underwater, I went dancing at posh night clubs, I went to a concert, I went hiking on jagged trails, all things I was either terrified to try (irrational fear that my ear would hurt or blow up or something crazy) or things that I thought would be overly difficult where I’d look like a fool. What happened? I wasn’t perfect, but I was pretty damn good and I felt proud and more encouraged each time. I haven’t stopped since and I find that the more I subject myself to it, the better I get at being in crazy, noisy, rocky places where I thought I’d never be able to function again.’

I really admire Eva’s optimism and motivation in moving forward with her life following her hearing loss. Thank you, Eva, for sharing your story.

This article was recently published by Hearing Link.

Hearing Me – with a Twist!

I am so happy to share an updated recording of the BBC World Service Documentarywhich I was involved in earlier this year.

This version combines the original audio with a twist at the end 😉

Please note, a transcript is also available through the same link – just scroll down the page to download:

BBC World Service – The Documentary, Hearing me

What does life sound like for someone whose hearing has suddenly changed? (This programme contains audio effects that may cause discomfort to people living with hearing conditions. There is a modified version of this programme, with quieter effects, on this page https://bbc.in/2TrInga) What does life sound like for someone whose hearing has suddenly changed?

Please take the time to have a little listen and share.

I hope you enjoy it!

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Learning a New Language with Hearing Loss

I have been living in Madrid for nearly 5 years. During the first two years, I was actively learning Spanish. I was attending evening classes, listening to daily language-learning podcasts on my commute, and was making an effort to converse with Spanish members of staff at work.

My sudden hearing loss happened at the start of my third year in Spain, and since then there has been a marked change in my ability and confidence in learning a second language. Now, over two and a half years following my hearing loss, I still feel like I haven’t addressed this deflated self-confidence.

After I lost the hearing in my left ear, I didn’t return to the evening classes. The sessions were heavily structured around mixing learners together to work in pairs or small groups, requiring them to contribute to the discussion. During each class there would be long periods of time involving many people talking in their groups, which meant overlapping voices, bouncing around the small sparsely furnished classrooms, making hearing and focusing any particular person’s voice very difficult. There were students from many different countries, which would add another obstacle to language learning in a class; with only hearing in one ear comes a difficulty understanding the different intonations and complexities of accents.

As I gradually started to discover mechanisms to manage life with single-sided deafness, I also began to realize that the matter of learning Spanish had been unintentionally suspended during the prior months. And, since returning some focus to my Spanish communication skills, I have realised that learning a language following a hearing loss can present some challenges.

My preferred way of learning Spanish was always through hearing it: by listening to podcasts and eavesdropping on conversations. I continue to be able to recognise Spanish words which I am already familiar with, particularly ones used habitually in conversation. New words, however, pass by quickly in speech, before I have time to think about the way they may be spelt or correctly pronounced. It is now more of a challenge to hear all the phonemes in a word which makes it difficult to identify new words and phrases accurately. Previously I could hear a new word once or twice and be able to spell it. Now, it takes many listens, and sometimes I just can’t hear it clearly.

When learning a new language, it generally takes time to process what has been said in conversation or an instruction, before reacting. Often it has been moments after speaking to someone when I realise what has been said, and by that point, the conversation has perhaps moved on. Similarly, with my hearing loss, it can take a moment to consider spoken information, which I may have only partly grasped, before attempting to decode what has been said. And so, a language learner who also has hearing loss may need extra time for reflection in conversation to enable comprehension.

A pause in dialogue may suggest to a native speaker that they have not been understood when their conversation partner is a language learner. If I ask a Spanish speaker to repeat themselves or if I say ‘pardon’ to signal I haven’t heard what they have said, they often reiterate their words in English, after hearing my accent. They assume it is a matter of misunderstanding due to language ability, rather than a hearing concern. This can be frustrating. I appreciate someone making an effort to speak to me in English with the intention of being helpful, but conversely, it isn’t aiding my language learning or confidence. I know my understanding of spoken Spanish is good, but with the abundance of background noise in public places, there are rarely the ideal listening conditions to facilitate this.

With my hearing loss came a difficulty in gauging the volume of my voice when there are other noises present. If I speak in Spanish and I don’t receive a response, I quickly lose confidence in my words. I usually assume I have pronounced or phrased something incorrectly. But, maybe at times, the issue isn’t my Spanish, rather that I simply speaking too quietly and am not being heard.

Quite surprisingly, I feel that I have developed some skills that ‘hearing people’ may not be as adept at employing in communication as those without full hearing ability; skills that actually help me to comprehend a second language. My hearing loss has prompted me to develop my skills in interpreting tones and in extracting meaning from fragments of dialogue. I am accustomed to filling in gaps left by undetected or misheard words in speech. When someone I know well, such as my boyfriend or my sister, makes a quick comment without first getting my attention, I may hear a collection of tones rather than words. Using my familiarity with their common speech patterns and knowledge of context I can often make a correct assumption regarding what they have said, sometimes without actually hearing a single word. When applied to communication in Spanish, I am able to use this skill to make conjectures, and while this method isn’t conducive to gaining a thorough understanding of a conversation, I am generally able to grasp the essence of a discussion.

I never really appreciated how much I depended on my hearing when learning Spanish. Although it can be challenging and may demand a lot of patience, hearing loss isn’t a barrier to learning a new language. There are many ways to learn a language and there are many resources available, such as phone apps and podcasts with transcripts. I now realise that in order to continue progression in speaking and listening tasks with my hearing loss, I will benefit from focussing more on the written aspects of Spanish. Visual familiarity with new words and sentence structures will help me identify these in dialogue. Perhaps, most importantly, I need to concentrate on building my confidence in continuing to learn a language without full sound.

If you have experience of learning a new language with hearing loss, I’d love you to share your stories and any tips you have. Please feel free to leave a comment.

This article was recently featured on The Limping Chicken – the world’s most popular deaf blog!

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Hey Rosey – My Music Festival Story

I was dancing! I was smiling! Some of my hearing loss grief was lifting, and this stifled part of my personality; this love of live music, was being reignited.

The room was small with black dividers forming the walls. It was simply furnished with a black coffee table and, in contrast to the dark surroundings, two white sofas which lined adjacent walls and were pushed together in the far right corner of the room. The air was stuffy and I moved my hair back from my forehead with my hand. Sitting on one of the sofas, I took a sip of my gin and tonic in an attempt to remain composed and to try and coax my fantastically overwhelmed grin to feign a cool smile. A sense of relaxed intimacy filled the air as more people entered the room, and music began to sound in gentle tones. Despite the warm atmosphere, a confused mixture of feelings had taken hold of me: astonishment, excitement, and absolute joy. I was a stranger to this level of attention, this kindness.

At the beginning of this year, I was involved in making a radio documentary for the BBC World Service, which detailed some of my experiences following my sudden hearing loss. During a moment in the recording, I found myself in an emotional situation. I was in an empty music venue and was explaining that I would no longer be able to go to live music events, due to my sensitivity to loud noises; a consequence of my hearing loss. I realised I would never be able to see my favourite band, The National, play live.

Many aspects of life have changed for me since the day I lost full sound. I have found that it is often the small, more personal effects of losing my hearing that carry the most impact. Tiny chunks of my personality have been broken away by some of the cruel repercussions of my hearing loss. When dealing with tinnitus, dizziness, ear pressure and sensitivity to sound, I sometimes feel that my focus is driven away from the things I love; the intrinsic pieces of my personality that make me, me. I have always enjoyed music, in particular going to summer music festivals. This love of music had been repressed; forced into quietness by the accompanying conditions to my hearing loss.

A few months after the documentary recording went live, I was contacted by the National’s manager and was invited to go backstage to meet the band before a show they were playing at MadCool; a music festival in Madrid, where I live. Of course, I was very excited at the prospect of meeting the band. Yet, it was also difficult to imagine this as an experience I would be able to enjoy, or perhaps even tolerate. After all, I had spent almost three years avoiding loud noises and live music events. But, it was a wonderful opportunity and one which I couldn’t refuse. I explained my sound sensitivity issues with the tour manager and was told that, if I felt comfortable, after the Meet and Greet I could watch the concert from the side of the stage where it would be much quieter than the audience area.

The weeks leading up to the event, I was nervous and excited. I was nervous about the festival noise and volume levels. I was nervous about meeting the band. I was determined to enjoy this day as much as possible. I was in a privileged situation and was going to make the most of it, though I knew the day would bring challenges.

As well as having noise sensitivity issues, I have also been advised by specialists against attending live concerts. I needed to ensure that I wasn’t going to be in any position that could cause noise-related hearing damage. And, above all, I needed to feel comfortable. I was going in prepared. I packed a bag with my earplugs and some ear muffs. I was ready.

My boyfriend and I arrived at the festival on a very hot day. The vibrations of the sounds as we approached the outdoor venue caused some pain in my ears; I had forgotten the strength of live music. Luckily, we didn’t have to spend much time in the main grounds of the festival.

After enjoying some time in the artists’ area, the band’s tour manager came to collect us. We followed her as she moved briskly, and within seconds we were walking down a black corridor with labelled doors on either side. I glanced up and read one of the labels: ‘The Smashing Pumpkins’. Oh my goodness! – We were in the artists dressing room area!

We reached the end of the corridor and I stopped for a moment at the realisation that I was about to meet my favourite band. “This is really happening, isn’t it?” I said to my boyfriend. Until this moment, I hadn’t quite believed it.

We turned left and walked straight into The National’s dressing room. It felt like entering a scene from a film. The first person I saw was one of the guitarists, Aaron, standing in the doorway playing his guitar. He greeted me and introduced himself. We were quickly introduced to the other band members and I had a brief chat with Matt, the lead singer. My boyfriend was busy talking to some of the other band members when Matt asked me to sit down on one of the white sofas. He told me to choose a good spot. I didn’t know what he meant by this, so I placed myself to the left of where he sat down (my hearing side) so that whatever happened, I would have some chance of hearing him.

Matt was joined by Gail, one of the female vocalists on their new album, and they were handed a sheet of song lyrics. I read the title: Hey Rosey.

And then, without any announcement, they began to sing. Music played in beautiful acoustic notes and the gentle tones meant that I was able to listen and enjoy it without pain. I thought perhaps the band were rehearsing before going on stage. But, very soon I realised they were playing solely for us. There wasn’t going to be a group of special guests as I’d expected – we were the only ones! This song was ours. I took a sip of my gin and tonic.

When Matt, the lead singer, began to sing I was reminded of a time a few years ago when my boyfriend bought me some new headphones. They were much better quality than I was used to, and to test the sound quality I played a song by The National. The music sounded so clear, almost like I was sitting in the room with them. At the time I commented that it was like a private serenade through my headphones. But, at this moment, I realised it was nothing close.

I tried to take it all in; looking at the faces of the band members, listening to the music, and enjoying the atmosphere. I wanted to be able to remember these moments; sharing this intimate display of creativity.

After the music stopped, I continued talking to Matt. He asked a little about my condition and he commented on how generous he thought I had been in sharing my story through the documentary.

Continuing the theme of the documentary that had brought me to this moment, I asked Matt whether there was a sound that he treasured. He paused for a second. Then suddenly he was visibly struck with emotion. He threw himself back in his chair and held his head in his hands, and replied, “The sound of my daughter giggling…her giggling.”

Soon, we were ushered into a black van and were taken to the backstage area. The stage manager showed us the setlist of songs and explained where we could stand on the stage. I was hoping I would be able to enjoy this, without the worry of hearing damage or sound sensitivity issues.

We watched as the band entered the stage, a few metres from where we were standing. Then the concert began.

I was wearing my earplugs and was able to tolerate the volume level of the music. From the side of the stage where we were standing, the vocals were sometimes difficult to hear, yet the feeling of music dancing through my body filled me with excitement. This energy, I hadn’t experienced for almost three years.

Matt dedicated the song Hey Rosey to me. Unfortunately, I didn’t hear him say my name, but my boyfriend alerted me, and I saw Matt waving. I waved back with unreserved delight. I was dancing! I was smiling! Some of my hearing loss grief was lifting, and this stifled part of my personality; this love of live music, was being reignited. I was filled with exhilaration. I thought I would never be able to go to a live concert again, and here I was, watching my favourite band from the side of the stage like a rockstar!

I have come so far on my hearing loss journey. In the documentary, I spoke about how I was trying to be aware of the sounds that I love, and to not take them for granted. This love of music will always be a part of me, and I hope to be able to continue to appreciate music throughout my life, whatever my hearing capacity. And, if this was to be the last concert I’ll ever attend, rest assured I enjoyed every moment.

Thank you to The National, Shaun Gibson from Straight and Narrow Artist Management, AJ Faber, and everyone else who made our backstage experience so special. Thank you also to Chelsea Dickenson from Audio Always who, without her documentary, this would never have happened. It was a truly amazing experience and one which I will treasure. You have all made my smile brighter.

Click here or below for the dressing room acoustic session.

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Hearing Me – A Documentary for the BBC World Service – Now Available to Listen to!

It’s been two and a half years since I suddenly lost the hearing in my left ear, and today I am celebrating all I’ve achieved since my hearing loss. Thanks to the BBC World Service, I am very happy to share this glimpse into my life without full sound.

Hearing Me is now live to listen to! Please note, a transcript is also available through the same link – just scroll down the page to download:

https://www.bbc.co.uk/programmes/w3csynqv

Another big thank you to Chelsea Dickenson (Audio Always) who spent 4 days following me around Madrid with a microphone, and who showed me just how much energy and attention goes into making a radio documentary.

Please take a few minutes to listen and share. Thank you 🙂

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Hearing Me – A Documentary for the BBC World Service

BBC World Service

Something exciting happened last month!

I was involved in making a radio documentary for the BBC World Service, which describes some of my experiences of living with hearing loss and tinnitus, and also reminds us not to take our hearing for granted.

I feel so lucky to have had the opportunity to take part in this, and to be able to share my story.

Hearing Me, is now up on the BBC World Service’s schedule: https://www.bbc.co.uk/programmes/w3csynqv

The documentary will be played several times so that people in different time zones can listen to it. You can find these by clicking ‘more’ below the programme information.

Afterwards, it will be available online through the same link as above, and it will also be part of their ‘The Documentary’ podcast series: https://www.bbc.co.uk/programmes/p02nq0lx/episodes/downloads

Please note there will a transcript to enable listeners to follow the dialogue.

A huge thank you to Chelsea Dickenson and Audio Always for creating such a personal and creative piece, I absolutely love it, and hope my readers/listeners (!) all do too!

‘Top 50 Deaf Blogs’ Award!

Dear readers,

I recently received an Email from Anuj Agarwal, the Founder of Feedspot, informing me that my blog has been selected as one of the Top 50 Deaf Blogs on the web! This is the most comprehensive list of the best Deaf blogs on the internet.

I am extremely happy to have been included in this list, as this is where I found many of the deaf blogs which helped me so much when I first experienced my hearing loss, and which I still follow today.

I am currently ranking number 35! Please click here to see the complete list.

Thank you to my readers for your continued support, likes, and comments.

Carly